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Everything posted by angelloz

  1. I get those reading frequently and have been diagnosed with low blood volume. Medications cause a migraine increase which leads to vomiting...so I salt and fluid load.
  2. I always became sleepy from benadryl until my dsyautonomia. Now it makes me feel nervous and uncomfortable.
  3. At the beginning I believe mine was overactive , just like Stark mentioned. I never got sick, stopped having cold sores etc... As I have improved over the years I am now getting colds. and illnesses that are going around. Go figure.
  4. Low potassium was one of the few things that always showed up in my blood work at the beginning of my journey. it is still low but not as low as at the beginning. I see this many times from patients with autonomic dysfunction. You would think it would be a clue!
  5. To all, it has been 10 years since I began my dysautonomia issues. I am now 60. In the beginning I was fairly bed ridden. Breathing was off, sleeping was impossible as my body would jerk awake often. Odd dreams, off vision, blood pooling, tachycardia, low blood volume, going to stores and feeling off kilter, weight loss and on and on. I made trips to the Mayo Clinic, saw many physicians, you all know the drill. Slowly, things have improved. I will never be the same but most every issue has lessened in intensity. Salt and fluids are my best friends. I just wanted you to know that things can get better even when it may take quite a long time. I wish I could feel the way I was before my illness but I am so very grateful for the gains I have made. For those just starting with all of this, hang in there!
  6. I also wanted to mention that although temperature issue have improved somewhat over time, I still get blazing hot every night a few minutes after I lie down then it eases. Positional change? That’s all I can come up with. I did have a sweat test done a few years ago that showed reduced sweating on some areas of my body. Oddly, an area on my forehead that they said they see on migrainers. I have had chronic migraines for 30 years.
  7. At the beginning I had problems with temperature regulation. I would shiver and chill and go sit outside on a very hot day...then suddenly become so hot I would feel ill. This symptom slowly improved over time but still pops up now and again. Ice on my wrists for heat and sometimes a hot bath was the only thing that would warm me up.
  8. Hello all, Well this is new. I have nausea with migraines but I am having nausea every morning lasting quite awhile. Have have autonomic dysfunction for 10 years so this is new. I take tylenol daily so I am checking on that. I don't take more than 1000 miligrams in a day. Also eat a high fat diet trying to gain some weight and I don't have a gallbladder so???? But have been eating high fat for awhile. always something :(.
  9. The morning has always been the worst for me!
  10. Same here!!!! Low pulse pressure and I feel terrible but no doctor has really said much about this when I bring it to their attention.
  11. The first test for autonomic issues would be a tilt table test. Symptoms very quite a bit from person to person. I do sometimes get surges that wake me up. They give me a bit of a scared feeling for no reason. Perhaps discuss a tilt test with your doctor.
  12. I have low blood volume diagnosed through a hemodynamics test. I had this done at the Cleveland Clinic. My blood work often shows low potassium levels. This was one of the only findings I had in the beginning.
  13. I have heard that if a positional change , like leaning forward, changes the severity is a good sign but definitely get it checked out. That is my plan!
  14. Thank you for all the input. Didn’t receive any meds at the hospital. See my cardiologist in a couple of weeks. It is so helpful to be able to share experiences. Since my autonomic issues I get so stressed.
  15. Hello all, So last night woke up to severe middle of the chest pain...of course went to ER. Things looked OK still had pain so the did a stress test to check for unstable angina, due to the fact that it happened at rest and the blood tests are usually negative for that type of angina. Upon reading doesn't seem like a stress test would rule it out and it is very serious. Pain took about 24 hours to resolve. Anyone have an issue like this? I will call cardiology Monday and make an appointment but...sigh..am very scared. Thanks for any responses. Hope you are all having some nice fall weather!
  16. When I click on the link, I get a message that says it can't be found?
  17. I had the blood volume testing done twice at the Cleveland Clinic. Once it was minimally low the second time it was moderately low. Fluids and salt help me quite a bit. As was mentioned above the test is long and uses a radioactive isotope. I too was told 24 hour urine gives no information on blood volume.. I can not tolerate most medications so I rely on salt and fluids. I was told not to overdue plain water as it causes electrolyte imbalance which has happened to me and is really scary.
  18. I have some of the same and was diagnosed with IC. Severity varies. At the beginning of my illness I noticed that when I would go I would urinate large amounts. Before autonomic issues I would go pretty frequently but small amounts.
  19. When I am in a flare I also need to urinate immediately upon standing. I believe I read at one point about that being a hyper pots symptom. I too have had occasional bouts of muscle pain and almost feeling flu like symptoms but it usually passes after a couple of days. Sometimes I winder if I have over done it a few days before. Let us know how your doing. Hopefully it will soon subside.
  20. Thanks to all of you. It just helps being able to bounce thoughts of of others who get it! I appreciate your sharing and caring.
  21. Sooo...yesterday I wrote about an increase in autonomic symptoms after years of improvement. Specifically, heart rate,anxiety, insomnia. I was thinking it was my recent bought with the flu. The only other change was I started drinking chamomile tea during the flu. You know the calming, relaxing tea. Well last night I didn't have any and finally slept a bit better. Wouldn't it be just like me to have an opposite response. We will see if things improve without the tea. gee whiz, my body doesn't seem to like anything!
  22. At the Mayo Clinic I was told I have autonomic neuropathy and mild autonomic failure, not POTS. I think as someone mentioned many do not have the POTS label but do have other autonomic issues. I too have very low BP and and low blood volume. Had to get a hemodynamics test for that to be found. Oddly with low blood volume I have nervousness and insomnia. That doesn't make sense to me. In any case...you are not alone!
  23. In short , I started all the autonomic issues in 2010. It was all pretty severe but discovered hypovolemia, sweat issues, heart rate and so forth though several years of doctor visits. Over time some of the symptoms have calmed down through the years. I can sleep again, salt and fluids help my blood pressure and heart rate stay a bit more stable, things like odd vision disturbances became better as time went on. Now, for the past couple of weeks I am having some of those issues again. Nervous, can't sleep, feel revved up, vision is off, heart rate higher again. So the only thing I can think of is 3 weeks ago I had the flu. Pretty bad but was happy I came through it OK. Now I am worried that it has caused some autonomic issues to become worse again. Just don't feel like I can go through years before I improve . I am 59 :(. Has anyone had flare ups after an illness and if so, how long did they last? Thanks in advance.
  24. My experience with steroids varies. It does seem to help my autonomic issues but after a few good days it starts to affect my migraines. I too only will take a tiny dose..2.5 to 5..10 at the most. I do suspect I have an autoimmune connection.
  25. My problems began at a much later age but one thing you mentioned stuck me. I haven't heard it mentioned much but at the beginning my joints, bones would pop like crazy when I rolled over in bed.Especially my head,neck upper back area. It was the least of my worries and eventually resolved on its own but found it very strange. I believe young people have a great chance of a full recovery but it still takes some time. Could you begin with a reduced schedule, only one or two classes until you have things in hand? I am wishing you all the best!
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